Name Change Poll Results: ME Wins

In September 2013, the IOM was contracted by HHS to devise a new definition for chronic fatigue syndrome (CFS), the current CDC definition being considered too broad. It was also charged with providing a new name at its discretion.

The IOM made its recommendations on Tuesday, February 10, 2015 in a report entitled, "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.”

One of the recommendations of the report was to eliminate CFS and to replace it, as well as myalgic encephalomyelitis, with "systemic exertion intolerance disease" (SEID).

The overall response to the new name has been negative. Patients don't like it for various reasons, and even Simon Wessely thought SEID might "add to the confusion." In the aftermath of the IOM's announcement, Leonard Jason was contacted by hundreds of outraged patients, which prompted him to write a blog post calling for greater collaboration between patients, ME/CFS physicians and government agencies, so that "all parties are involved in the decision-making process."

The prompt to gather feedback has generated several polls and surveys on the new name, sponsored by Health Rising, Paradigm Change, the ME Association, and ProHealth, among others. 

In all of these surveys and polls, ME has been the name of choice.

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ME Association Poll Results

The ME Association in the UK conducted a poll which had a total of 724 respondents. In answer to the question, "Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?" the majority answered with an emphatic "no." This is not surprising given the historical use of ME in the UK.

But while most did not like SEID, there were mixed responses from among the remaining 38%, indicating that a significant number of people are not happy with having two names (ME and CFS) for the disease.

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Cort Johnson/Health Rising Poll Results

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In February, Cort Johnson conducted a poll in which respondents were asked to rank different names for ME/CFS. A total of 550 people took the initial poll.

When asked to rank their favorite names from first to last, ME was the preferred name. SEID was the least preferred.

• Myalgic Encephalomyelitis (ME) – 2564 (26% of total points)

• Ramsay’s Disease – 1942 (20%) 

• Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome – 1932 (20%) 

• Chronic Fatigue Syndrome (CFS) – 1720 (17%) 

• Systemic Exertion Intolerance Disease – 1713 (17%)

In a second survey, Neuroendocrineimmune Disease was added to the list. It proved nearly as popular as ME, but once again SEID came in last. 

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ProHealth Poll Results

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On February 26, 2015, ProHealth conducted a poll on the proposed new name for ME/CFS: “What name would YOU choose for CFS? Take the poll!”

The survey consisted of three questions:

1. Do you have CFS or ME?
2. Do you think CFS should be replaced by a new name?
3. Please choose which name you would prefer.

(Respondents were given a choice of myalgic encephalomyelitis, ME/CFS, Nightingale's Disease, Ramsay's Disease, SEID, Cheney Peterson Disease, Incline Village Disease, and No Preference. In addition, respondents could make suggestions for additional names, and make comments.)

A total of 3059 people filled out the survey, making it the largest survey on the proposed name change. Of those, 2690 respondents reported having either ME or CFS. Of those who did not have either diagnosis, most had a family member with the disease, or had been diagnosed with FM.

The majority of respondents (75%) thought that CFS needed to be replaced. The primary reasons given were that the name was trivializing and did not capture the scope or seriousness of the illness. The 25% of respondents who did not agree that a new name was needed gave familiarity, ease of pronunciation, and accuracy as reasons to keep CFS.

The name which garnered the most support was myalgic encephalomyelitis (781 votes). The reasons given were historical continuity, accuracy, and medical weight. SEID got 309 votes. The reasons given were accuracy, and inevitability ("It's too late now to do anything about it"). 179 people wanted to keep the current name ME/CFS for reasons of accuracy and continuity. Aside from Ramsay's Disease, the remaining names garnered very few votes. Those who commented on the choice of the remaining names mentioned that they did not know who Cheney or Peterson were (or Ramsay) and that they had no awareness of the significance of Incline Village or how Nightingale might be associated with the illness.

Comments from Respondents

Respondents had a great deal to say about the name change. The survey garnered 146 pages of additional comments, the majority of which were critical of both CFS and SEID as appropriate names for the disease. Some of the critical comments of the proposed name SEID are as follows:

"People are going to make jokes about the name systemic exertion intolerance disease." 

"NOT SEID, which is an even worse name than CFS." (7 people made a similar statement.)

"Not SEID. Too much negative stigma." (31 people made a similar statement.) 

"Until they are able to specify exactly what disease people are suffering from, it would be prudent to stick with ME which most people are familiar with." (12 people made a similar statement.) 

"CFS is an appalling name, as is SEID. It is associated with being lazy and nothing could be more untrue. Stick with ME - we all know what this is and can easily identify with the name." (13 people made a similar statement.) 

"I would have great difficulty in remembering what it is that SEID actually stands for. It is so much more than "exercise intolerance."

"I suffer from severe pain all over my body and this is not as a result of "exercise." (7 people made a similar statement.) 

"I don't like the Exertion Intolerance. I think it continues the trivialization of this terrible illness." (13 people made a similar statement.) 

"Exertion intolerance" sounds like people with SEID just don't want to exercise." (37 people made a similar statement.) 

"It still points to a symptom, doesn't capture the broader impact." (14 people made a similar statement.) 

"Changing the name to SEID is just going cause more confusion." (37 people made a similar statement.) 

"Systemic Exertion Intolerance Disease (SEID) sounds like a rubbish name to me. It does not sound as if it relates to the total exhaustion, massive joint instability, massive gut problems, massive migraines and vomiting, massive whole body disturbances. It is altogether too polite and meaningless." 

“Intolerance" in the SEID name is worse than "fatigue" as most people have "intolerances." This word cannot be taken seriously." 

"SEID sounds like we're lazy. It’s an awful name." (16 people made a similar statement.) 

"Exertion intolerance runs risk of being dismissed as work shy or lazy." 

"SEID is a poor choice. ANY of the above would be preferable." 

"Sounds like we're allergic to exercise or would be perfectly well if we handled stress better." 

"SEID is arguably worse than Fukuda (apart from getting rid of the name, CFS), as it leaves out viral symptoms like swollen or tender lymph glands and viral and muscle (peripheral) symptoms. No mention of acute viral onset either. Moving further away from ME and even getting rid of Lake Tahoe type outbreaks, which was additional evidence. I'm concerned that SEID could replace ME. This is yet more political (and insurance industry) interference and attempt to put away links to the original entity." (9 people made a similar statement.) 

"The new name seemed to come randomly out of nowhere. And like the earlier names, it doesn't encapsulate the entire experience of this illness. If they can't do that, then just stick with the names people know. All this name effort might be better invested in understanding the disease and needed treatments." 

"SEID is worse. Way too confusing." (19 people made a similar comment.) 

"My fatigue is NOT just with exertion."

"ME isn't great but at least it sounds serious, and is what the rest of the world calls the disease. The new name is so awkward, no one will ever use it - CFS will continue to be what the disease will be called." 

"I question and suspect Insurance Companies not wanting to cover medical bills as well as disability claims are trying to make the Syndromes even more confusing with less credibility."

Several people made the comment that: "It is a mistake to change the name prior to acquiring enough hard data on its pathophysiology through validated studies."

Some other name suggestions were:

• Myalgic Encephalopathy (20)

• Neuroendocrineimmune Disease (or Dysfunction) (10)

• Ramsay-Gilliam’s Disease (5) Note: Dr. Alexander Gilliam investigated the Los Angeles County outbreak in 1935. Dr. Melvin Ramsay investigated the Royal Free outbreak of myalgic encephalomyelitis in 1955.

• Hillenbrand's Disease

• Get no treatment disease

• The Disease From Hell

• CISCAD : Chronic Immune System Chaos Disease

• The $#!@ 

It is very clear from the 1,244 additional comments that patients with this illness have strong concerns, not just about the name change, but about the lack of funding, the lack of recognition, and the lack of patient care.

The full results of the ProHealth survey were sent to the IOM, HHS Secretary Burwell, and ORWH Deputy Director Susan Maier.

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Lisa Petrison/Paradigm Change/ME Advocacy Survey

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A joint survey conducted by Paradigm Change and ME Advocacy asked a total of 1,147 people about a possible name change for the disease. The results were analyzed in a 526-page report which can be downloaded from Paradigm Change as a PDF file.

As with previous surveys, the preferred name was ME. Neuroendocrineimmune Disease came in second, as it did in Health Rising's second survey.

The Paradigm Change survey broadened its scope by asking for reactions to both the name and the process. The majority of respondents thought that the name SEID was either very bad or pretty bad, and 46% thought the IOM had failed to produce a legitimate name. 72% of respondents said that if the government started using SEID without input from patients, they would find it unacceptable.

In addition to garnering responses to the name, this survey asked respondents about the IOM process itself. More than three-quarters (76%) thought that patients need to have more input ability in the naming process, and that the IOM had not allowed for sufficient input. About half of the participants (51%) said that they felt angry about the naming process.

The survey results were sent to HHS secretary Sylvia Burwell; to the heads of the NIH and CDC; to CFSAC members; to the IOM panel chair; to the NIH P2P committee; and to clinicians and researchers focusing on the disease.

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In sum, it is clear from these surveys that the people whom the new name will most affect - patients, as well as researchers and ME/CFS specialists - have been entirely left out of the process of devising a name for this illness. It is also clear that the preferred name - on both sides of the Atlantic - is myalgic encephalomyelitis. Regardless of the IOM's opinion that brain inflammation is not yet proven be part of the illness, or their belief that pain is "nonspecific," there are historical reasons for choosing ME. 

It is more than likely that the decision to abandon ME was not primarily based on medical reasons - as there are numerous illnesses whose names have been assigned by history - but on politics. 

ME is associated with outbreaks. One of the forces that drives decisions made by HHS, as well as most state health agencies, is downplaying epidemics. AIDS and Lyme are cases in point. Both of these epidemics - one with a human vector, and one transmitted by ticks - were ignored until they became too big to sweep under the rug. Sadly, the agencies that are supposed to be responsible for protecting public health have consistently used the same tactic with ME.

Ultimately, SEID needs to be rejected not only because it is an inadequate name that does a disservice to people who must bear it, but because through inventing yet another name it denies one of the fundamental aspects of the disease, which is its history of outbreaks. 

Fluge and Mella on Rituximab and Autoimmunity in ME

A Cambridge University radio series, The Naked Scientists, interviewed Øystein Fluge and Olav Mella on March 24 as part of a program exploring the interface of biology and psychiatry. 

You can listen to the interview HERE. The interview starts at 39:00 and ends at 47:00.

Also interesting is the previous interview with Belinda Lennox, who discovered that 8% of people diagnosed with schizophrenia actually have an autoimmune disease. In these patients, antibodies attack NMDA receptors in the brain, producing hallucinations. Once treated with immunosuppressants, the symptoms of schizophrenia disappear.

How does this apply to ME/CFS? 

ME/CFS, like schizophrenia, is defined as a group of symptoms, which means it is not actually a diagnosis. Pneumonia, tuberculosis, and a chest cold all produce coughing, but they are not the same disease. (And just as those three illnesses are not subsets of "coughing disease" people with ME/CFS are not a subset of "fatiguing illnesses.")

In like fashion, when asked if people with the NMDA receptor antibodies constitute a subset of schizophrenia, Lennox replied that they do not. They have Anti-NMDA Receptor Encephalitis, which is a disease in its own right.

This raises the possibility that the supposed "heterogeneity" of people with ME/CFS is because they actually have different diseases. It is entirely possible that one group of people diagnosed with CFS or ME may have a post-viral illness, another may have poisoning (e.g. Gulf War Illness), another an ongoing bacterial infection (e.g. Lyme), and yet another group an autoimmune disease. While all of these may produce the same symptoms, they do not share the same pathogenesis, would not require the same treatments, and are therefore not the same disease.

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Is ME an autoimmune disease?

Transcript

Øystein Fluge and Olav Mella, Haukeland University Hospital, in Bergen

Chronic Fatigue Syndrome(CFS), also known as ME, affects about 1 person in 500. Sufferers describe symptoms of profound tiredness and lethargy that doesn’t improve with sleep or rest. There’s currently no consensus on what might be causing the condition, there are no tests to confirm the diagnosis, and nor is there a cure. But now we may be closer to understanding what causes at least some of the cases of the condition thanks to research carried out in Norway, as Øystein Fluge and Olav Mella from Haukeland University Hospital, in Bergen, explain to Chris Smith...

Øystein - We are oncologists that work mainly on lymphomas and brain tumours. But in 2004, we observed a patient with longstanding ME who got lymphoma and she experienced a totally unexpected and very marked recovery of ME symptoms after she received lymphoma treatment with cancer chemotherapy. We speculated on this case and when we met new ME patients, it was striking to learn how similar the patients were in symptoms and how they described to be previously completely healthy and often, with an abrupt start of ME after infections. So, we reasoned that B-cells could be important in a subgroup of ME patients.

Chris - When you say, B-cells, these are the white blood cells, the lymphocytes that make say, antibodies and have a memory against infections we’ve seen before, aren't they?

Øystein - Yes, but we did a small pilot case series with a single infusion of the drug rituximab which targets these B-cells to 3 ME patients and they all had a marked but transient clinical response. We published this case series in 2009.

Chris - So, you were giving these people in the course of treating their blood cancer, their lymphoma, the drug rituximab which hits and destroys B-cells in the body which are in these patients, the cancer cells. And as a side effect almost of that treatment, these people who had previously said they had disabling symptoms of ME, chronic fatigue syndrome, they got better.

Øystein - That's correct.

Chris - Olav, I was going to bring you in and say, what actually happened to these people when you did this?

Olav - The 3 pilot patients all had response to treatment and one thing we observed in these 3 patients is that we have a pattern of responses and relapses after the rituximab treatment with a lag time of
several months from initial and rapid B-cell depletion until they start getting clinical responses. Such patients are also seen in established autoimmune diseases after rituximab treatment. We believe that this fits with B-cells not being produced for a period after rituximab which allows a natural degradation of autoantibodies – that is antibodies that have adverse effects on bodily functions, with the symptom improving when the antibody level drops. We really think this points at ME at least in a large subportion is an autoimmune disease.

It’s also spotted that 70% of the patients with ME, they get it immediately after an infection and there's, like in other autoimmune diseases, 3 to 4 times as many women as men who get the disease. And also, a big study from the US has shown a moderate and highly significant risk of B-cell lymphoma in elderly ME CSF patients, showing that the patients may have chronically activated B-cell system. We see the same lymphoma risk also in established autoimmune diseases like rheumatoid arthritis, lupus and Sjogren’s disease.

Chris - So, putting all of this together, you get these patients who, they happen to have a lymphoma – a cancer of the blood system – but they also have chronic fatigue syndrome. You treat their lymphoma with a drug which takes down their B-cells which are the cause of their cancer. They get this pattern of, their disease recovers when the B-cells go away but with the time lag corresponding to the time it takes the B-cells to go and the antibodies to go. And then when the B-cells come back in these patients, then the symptoms come back which looks like it’s tying the two things together, doesn’t it? So, what do you think that the B-cells are doing in these people to actually make, Olav, the symptoms of chronic fatigue syndrome in those patients?

Olav - Well, we think that it is a kind of an immune response and it obviously affects some very central function in the body. We’re not at all convinced that ME is kind of inflammatory condition in the brain. Probably, more important, I think what is happening in blood vessels, we have indications that the blood vessel do not function as they should, given the dynamic flow to different parts of the body when it is needed.

Øystein - It’s like the patients have a problem in the fine-tuning or regulation of blood flow according to the demands of the tissues for oxygen and nutrients. The patients often describe they feel like running a marathon when they have done a limited exertion and they get brain fog from exertion and so on. So, our hypothesis is that the immune system somehow disturbs the fine-tune regulation of blood flow and tissues including in the brain.

Chris - Øystein, what are you now doing to try to firm this up because your initial results as you published, while very interesting are on very small numbers of patients? Obviously, we’d like to see big numbers of patients in order to make sure that this is not a statistical blip, it’s not happening due to chance, it’s real.

Øystein - To try to convince ourselves, we first did, as you say, a small randomised study which was published in 2011 with 15 patients given two infusions of rituximab and 15 patients given placebo, turn out that the 15 that got rituximab had a clinical response while 2 of the 15 in the placebo group. So, that was some kind of sign of clinical activity to us. So then we did an open label study with no placebo group, further rituximab infusion, prolonging the period with low B-cells.

We gave 6 infusions of rituximab up to 15 months and then followed the patient for 3 years. So, this study is now submitted for publication but we can say that again, 2/3 had a clinical response and the response durations were much prolonged when we gave maintenance treatment. But these two studies are not designed to give a definite answer to whether rituximab works in ME.

So therefore, we are now performing a larger phase III study in Multicentre in Norway with 152 patients. Half of them will receive 6 rituximab infusions during the first year and half of them will receive placebo. And then we will follow the patients for 2 years. And we hope that this study will either verify or refute if rituximab may give benefit to ME patients in a significant proportion.

Medical Politics and Cognitive Dissonance: How Psychiatrists Purloined ME

On March 18th 2015, The Royal Society of Medicine in London hosted a meeting entitled "ME/CFS: Frontiers, Clinical Practice and Perception." 

Speakers included Dr Charles Shepherd of the ME Association; Anna Gregorowski, Nurse Consultant at Great Ormond Street Hospital; Dr Luis Nacul of the London School of Hygiene and Tropical Medicine; and Dr Gabrielle Murphy from the ME/CFS Service at the Royal Free London. (You can read more about the meeting at ME Research UK.)

Among the distinguished speakers was the Countess of Mar, a member of the House of Lords, and a stalwart supporter of ME patients in the UK. In her speech (see below) she pinpoints the source of the continued "controversy" surrounding me, which is, in her words, pure "medical politics."

She quotes Frantz Fanon as saying:

“Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted. It would create a feeling that is extremely uncomfortable, called cognitive dissonance. And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”

Those familiar with the history of medicine will recognize the influence of "cognitive dissonance" as it applies to medical politics. Ignaz Philipp Semmelweis, the Hungarian physician who first recommended that doctors wash their hands, was firmly rejected by the medical community. At 47, Semmelweis was committed to a mental institution, where, within two weeks, he was beaten to death by guards.

While Semmelweis is a dramatic case in point, it does speak to the degree to which the medical establishment clings to outmoded beliefs and rejects new ideas with equal fervor. 

In order to "First, do no harm," it is essential that physicians stop relying on "received wisdom" rather than facts for the basis of their opinions. Received wisdom, like so much that goes unquestioned, is nothing but prejudice that has been repeated so often it has taken on the veneer of truth.

As the Countess of Mar says, "I know how very difficult it is to say “Sorry, I got it wrong”, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard."

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ROYAL SOCIETY OF MEDICINE

ME/CFS: Frontiers in research, clinical practice and perception

"THE POLITICS OF ME/CFS"

Ladies and gentlemen, I am grateful to the Royal Society of Medicine who have given me the opportunity to offer a political view of ME/CFS.

I will have been an Independent Crossbench member of the House of Lords for forty years in the autumn. For more than twenty of those years, with the help of a great many other people in the community, I have been trying to persuade governments of different colours that ME/CFS, together with organophosphate sheep dip poisoning, Gulf War Illnesses, Aerotoxic syndrome and other medically unexplained physical symptoms, known as MUPS, are not figments of patients’ imaginations, nor are they nocebo effects, but are very real conditions.

In so far as ME/CFS is concerned I have had some support from Members of Parliament who have constituents with the illness, but have been ploughing rather a long and lonely furrow in the Lords. For the sake of brevity, I will call the condition ME, which is what most patients prefer, except where accuracy demands otherwise. I know that the medical profession uses the shortcut term CFS, but that covers a much wider range of conditions that what I know of as classic ME. I have to say that I do deal with what are probably the worst cases.

I came to ME through parents who had used OP head louse shampoos on their children – treatments recommended by doctors and school nurses. Some children developed symptoms which were labelled ME within months of the treatment. I don’t know whether you recall that the advice was to shampoo the child’s head and, without rinsing, cover the head with a shower cap and leave overnight, to be rinsed off in the morning. Anyone with any knowledge of OPs knows that one of the most absorbent parts of the body is the scalp, and that some individuals are more genetically susceptible than others; so these poor children were poisoned.

Very unfortunately, once a person, be they child or adult, has the ME label all support and assistance from the medical profession and social services seem to vanish into thin air. Despite the World Health Organisation classification of CFS/ME as a neurological condition under ICD 10 G93.3 and this classification being accepted by Ministers of both the Department of Health and the Department for Work and Pensions; despite major reports, one by the Chief Medical Officers working group on CFS/ME in 2002 and two others by the All Party Parliamentary Group on ME in 2006 and 2010, all of which recognise the severe impact that this disease can have on many patients’ lives, far too many of those professionals treating and caring for people with ME have not received the message. The CMO Report mentions that 

“The disbelief and controversy over CFS/ME that exists within the professions has done nothing to dispel public disbelief in the existence of such a seemingly varied and inconsistent illness.” 

Despite all the fine words of Ministers and report writers, I repeatedly ask myself why it is that the recognition and treatment of this illness has remained in the doldrums for so long.

All Party Parliamentary Groups are supposed to be for the enlightenment of Members of Parliament from both Houses. The purpose of the APPG for ME is to: 

“Raise awareness of ME and support the improvement of health, social care, education and employment opportunities for people affected by ME.” 

There was a problem with communicating with Ministers effectively at what turned out to be large public meetings with few MPs present. After consultation with the leaders of the main ME charities and support groups, Forward-ME was formed in 2008 under my chairmanship. We have met successfully with people such as Steven Holgate, Lord Freud, Edward Timpson MP and ATOS as well as others in the health, social care and education world and are, I believe, respected for the respect that we show to each other and to our speakers. The APPG was re-formed in 2010 on these same principles and we now work together very happily, though meetings are still attended by very few MPs.

When we think of politics we tend to think of party politics – what goes on in the Westminster village, in local government or at the parish pump. It was a while before I recognised that amongst other settings there are medical politics.

Until the 1980s, when the Press picked up on the ‘Yuppie flu’ diagnosis, there  seems to have been tacit acceptance that ME was a real physical condition even though the cause was then, as it is now, unknown. There were a number on notable British doctors, amongst them Dr A Melvin Ramsay, who flew the flag for Myalgic Encephalomyelitis from the 1950s onwards, Dr Elizabeth Dowsett, Dr Alan Franklin and Dr John Richardson who, from their observations of ME patients over decades, were convinced that ME was caused by persistent viral infections. This persistence would appear to be confirmed by Dr Mady Hornig and Dr Ian Lipkin at the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health in their 27 February 2015 paper – ‘Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment’, who have identified distinct immune changes in patients, said to represent the first robust physical evidence the ME/CFS is a biological illness as opposed to a psychological disorder, though I readily acknowledge that we still have a long way to go.

It was when a small group psychiatrists from the UK, Europe and the USA purloined ME and renamed it CFS in the mid-1980s that the real problems began. They insisted that it was a psychosocial behavioural problem that could be readily overcome with a course of cognitive behavioural therapy and graded exercise. From their earliest beginnings, they managed to attract the attention of the media and of their medical colleagues with their assertions. They found their way onto government advisory committees and research organisations; onto the  boards of medical publications and into insurance companies where their message was greeted with apparent delight because these organisations would not have to think any more. The cause and solution were at hand.

No need for doctors to do too many investigations; no need to perform anything but psychological research; no need for social security payments by finding that claimants are really fit for work. They developed a means of stifling opposition by refusing to publish papers showing biological causation and, joy of joys for the insurance companies found that patients were reporting a psychological condition which was excluded in their policies. 

As recently as last year CFS was described as ‘a culturally driven disorder with no known organic cause’ in the BMJ.

This school of psychiatrists has persisted in their view despite more than 6,000 peer reviewed papers, including experimental studies which demonstrate a range of biological findings associated with people with ME. Funding for biological causes and treatments is miniscule against the funding for psychiatric or psychological ones. Researchers such as those funded by Invest in ME and ME Research UK, have funded excellent pilot and seed corn studies on a shoestring, while a significant number of biomedical research applications have not been funded by the MRC in the past 20 years, including some targeted at pathophysiology. It is hard to believe that all were written so badly that they could be rejected, particularly as some came from established researchers with a track record in this and other fields. 

Could it be that the expert reviewers were, once again, psychiatrists who appeared to have an interest in suppressing research that counters their views? 

Many suspect this to be the case. This can only be political. It is also political suicide for researchers in major universities to suggest that they conduct studies into biological causes for ME.

The largest and most expensive state-sponsored treatment studies (the PACE and FINE trials) which both focused exclusively on psychosocial management cost in excess of £6 million, dwarfing funding for biomedical intervention, yet both failed to show improvement on real-world outcome measures. These huge sums have taken us no nearer to finding a cure or the underlying cause.

There is a silver lining – more recently MRC funding has been targeted on more biological research, though the amounts of funding allocated are still miniscule in relation to that for other diseases

It is extraordinary to me that men and women who are trained to “First do no harm” and to “Listen to the patient for they will probably tell you the diagnosis” as well as to exclude all possible biological causes before considering psychological ones cannot but be aware of the enormous damage they are doing to a very large number – more than 200,000, patients with this condition. By recommending that too many investigations should not be conducted because they encourage illness behaviour they are risking missing vital findings of treatable conditions such as endocrine dysfunction, rarer medical conditions or  even cancers that present with chronic fatigue. How, with all the publicity, can they not be aware of the misery, neglect and, too often, abusive treatment that I can only describe as barbaric that is meted out to patients with a diagnosis of ME?

I am aware that multiple sclerosis, Parkinson’s disease and diabetes were all once in the domain of the psychiatrists and that this domain is shrinking as new discoveries are made. To compensate, we have a compendium of purely subjective conditions with labels such as conversion syndrome, pervasive refusal syndrome, and neurasthenia to name but a few. There is no biological explanation for these, but they do help the uninitiated to believe that the condition is psychological.

How can we change this situation? Frantz Fanon, the French psychiatrist, philosopher and revolutionary from the middle of the last century wrote:

“Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted. It would create a feeling that is extremely uncomfortable, called cognitive dissonance. And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”

Ladies and gentlemen, I know how very difficult it is to say “Sorry, I got it wrong”, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard.

Petition Launched Against SEID

Below is a message from Kristina Bray, who has launched a petition calling on the IOM to cease any attempts to rename ME as SEID (systemic exertion intolerance disease). 

Kristina argues that the new name does not express the complexity of the disease and, as a consequence, will not be taken seriously by physicians. 

Those are good arguments. In addition, it needs to be pointed out that "exertion intolerance" is a new term. Medical professionals are not familiar with it, and, more importantly, insurance companies do not include it on their roster of conditions that can be tested for. Exercise intolerance, on the other hand is familiar to both physicians and insurance companies. It is, however, not specific to ME/CFS, and therefore is fairly useless as a description.

Dr. Clayton has responded to the objections raised against the term SEID by saying that SEID could be used in addition to CFS and ME, each one of which would have its own definition. Clayton's solution would make it impossible for anyone to diagnose this illness - which defeats the whole purpose of the million-dollar IOM study.

Do we really need yet another acronym? Why not simply do away with CFS, and replace it with a name that has historic continuity, for example, ME? And wouldn't it have been more efficient to adopt the criteria that specialists have already devised for the illness (the CCC) rather than reinvent the wheel? 

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By Kristina Bray

As sufferers of, carers for or supporters of people suffering from the debilitating neurological illness M.E. (Myalgic Encephalomyelitis) we call upon the IOM (Institute of Medicine) to cease any attempts to have M.E renamed as S.E.I.D.

As people with first hand experience of the horrors of ME we do not feel that "Systemic Exertion Intolerance Disease" in any way expresses the severity, complexity nor the full impact that ME has on those who suffer from it.

Indeed, we feel that changing the name will hinder, rather than help people in seeking proper diagnosis and/or medical support and could also undermine attempts to raise awareness of this serious and chronic condition among the general public.

Sufferers of ME need awareness, support and treatment in the short term and research over the longer term to give them the best possible chance of achieving improvement, they do not need a "re branding" exercise that can do nothing to tackle the real struggles faced by people with ME.

You can sign the petition here:

https://www.change.org/p/institute-of-medicine-cease-calling-for-a-change-in-the-name-of-me-to-seid?

Prestigious Research Team Seeks Funding for ME/CFS Immune Biomarker Research – Deadline March 27!

Dear ME/CFS patients, friends, and family,

I am an ME/CFS Spanish patient, administrator and owner of the national Spanish ME/CFS research forum, and also a 3rd year medical student.

I have no relationship with ASSSEM or IrsiCaixa, other than as an individual supporter and patient. I do believe all of us in the ME/CFS community deserve that the data this team has found be expanded and published.

We’ve gotten the attention of a highly recognized international AIDS research team, IrsiCaixa. They performed a preliminary study which produced very useful results that could be used as possible biomarkers for ME/CFS, and that might open the field to further exploration of the immune aberrations in ME/CFS, and, perhaps, lead to new therapies.

If these preliminary results are confirmed in the new study they are willing to carry out, we will have a published double-blind cross-sectional study. With such a large sample, this will probably be published in a peer-reviewed international journal.

And we are only $9,000 away from making this real! So...

Please HELP in any way you can!

Best wishes to you all!

Sergio

_________________________________-

PROJECT: Characterization of immunological biomarkers in ME/CFS

(Read the entire project); (Original in Spanish)

IrsiCaixa, an internationally recognized institute for AIDS research, published a study in 2013 which they found alterations in subsets of both T and NK cells. Specifically they identified eight molecules associated with poor immune system function that could be used for diagnosis.

(For further information, read the article: "Spanish HIV Experts Give Aid to ME/CFS" by Joel Snowathlete on Phoenix Rising, April 2013)

They expanded this preliminary study, with the project called "Comparison of biomarkers in EM/SFC", for which a crowdfunding of 29.000 € was launched and achieved last year. (Click HERE to read more.)

The preliminary results obtained from this second comparative study using 193 participants and 20 healthy controls showed specific immunological abnormalities in ME/CFS patients, and identified two subgroups of patients, according to different combinations of NKCD57 and NK NKP46 cells. These subsets could be explained by reactivation of herpes viruses, according to the authors. They also found other interesting abnormalities worth studying further.

The next step in this project is to expand it!

The research team wants to:

1. Double blind the study,
2. Increase the number of the sample (1 healthy control per each 2 patients),
3. Use the more accurate Canadian Consensus Criteria for diagnosis and
4. Add new markers to be measured in the study, such as the percent of Perforin in NK and CD8 T cells and a much more in-depth study of the B lymphocytes family, among others.

How much do they need?

The total project is just $13,000. ($12,000 € or £8,700). They have already raised $4,000. So, only $9,000 is needed!

Who is making this project possible?

Patients (who else!) who have funded the project by paying for their own tests, and ASSSEM, a National Spanish non-profit NGO composed mainly of health professionals dedicated to ME/CFS and FM, are making the project possible. ASSSEM was and is the promoter of the previous and the current campaign -  they are the ones who got IrsiCaixa interested in us, and involved in this promising project, in the first place!

How to collaborate

1. Help spread the word!!!!

Share on social networks, post on ME/CFS platforms, publish the campaign on your blog, and tweet it.

2. DONATE

You can donate using Paypal or your credit card:

Go to the ASSSEM website, and click the yellow "Donar" button on the right, which appears about half way down the page when it first loads.

Wire transfer:

IBAN: ES0901828732100201553888
SWIFT/BIC: BBVAESMMXXX
Bank: BBVA;
Beneficiary: ASSSEM,
Concept: “Objetivo 12.000”

CAMPAIGN DEADLINE: March the 27th, 2015

More information on: www.asssem.org

Hemispherx Enters a Collaboration for the Commercialization of Ampligen for CFS in Australia and New Zealand

On the heels of its $8M manufacturing plant rehab, Hemispherx announced today that it has signed an agreement with Emerge to seek approval of Ampligen in Australia and New Zealand.

After decades of clinical trials for FDA approval in the US  - costing hundreds of millions of dollars -  Hemispherx has taken advantage of the IOM's stamp of legitimacy for a disease which up until now has been viewed by the medical community as a form of neurosis. A disease demands treatment, and in anticipation of a treatment for an illness that affects 17-24 million worldwide, Hemispherx was recently named one of 4 sizzling hot biotech stocks by the Wallstreet Observer.  

This is the perfect time to ask the FDA to stop stalling, and to approve Ampligen in the US.

Click HERE to call for a Congressional hearing on Ampligen.

__________________________________________________________

PHILADELPHIA, March 9, 2015 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc. (NYSE MKT:HEB) (the "Company" or "Hemispherx"), reported today that it has executed an agreement with Emerge Health Pty Ltd. ("Emerge") to seek approval of Ampligen, an experimental immunotherapeutic, for Chronic Fatigue Syndrome in Australia and New Zealand and to commence distribution of Ampligen in both countries on a named-patient basis, where deemed appropriate.

Hemispherx and Emerge will collaborate on seeking regulatory approval from Australia's Therapeutic Goods Administration ("TGA") and New Zealand's Medicines and Medical Devices Safety Authority ("Medsafe").

Under an exclusive license to sell, market, and distribute Ampligen in Australia and New Zealand to treat Chronic Fatigue Syndrome, Emerge will implement regulatory-compliant programs to educate physicians about Ampligen for CFS and seek orphan drug designation and approval of Ampligen to treat CFS. Hemispherx will support these efforts and will supply Ampligen at a predetermined transfer price.

Chris Rossidis, Co-Founder and COO of Emerge, said, "This agreement with Hemispherx represents an opportunity which is exactly why Emerge was formed, to provide Australian and New Zealand patients with products that their physicians believe would be helpful. Given that there is no product approved specifically for the treatment of Chronic Fatigue Syndrome anywhere in the world, and at estimated prevalence rates of CFS in Australia and New Zealand, there could be 50,000 to 150,000 CFS patients with no dedicated treatment of this debilitating disease. We hope to be able to start providing Ampligen to the most severe of these patients during this year."

Recently, a blue-ribbon committee of the Institute of Medicine (IOM) of the National Academy of Sciences (USA) issued a comprehensive report on CFS reaffirming the seriousness of the disease and the need to accelerate research on potential treatments.

Thomas K. Equels, Executive Vice Chairman and CFO of Hemispherx, said, "We are very pleased to be collaborating with Emerge to provide Ampligen under these unique access programs and to work with them to gain formal regulatory approval. While continuing our efforts to gain approval in the US, we are seeking similar named-patient programs and approvals elsewhere."

About Ampligen®

Ampligen®, an experimental therapeutic, is a new class of specifically-configured ribonucleic acid (RNA) compounds targeted as potential treatment of diseases with immunologic defects and/or viral causation.

About Emerge Health Pty Ltd
Emerge Health Pty Ltd is an innovative, specialized Australian pharmaceutical company focused on the marketing and sales of niche, high quality medicines to the hospital sector. Emerge Health is dedicated to providing exceptional products and support to ensure they meet their customers' and partners' needs and priorities.

Emerge Health has a unique, highly experienced management team with a track record of success in the Australian and New Zealand pharmaceutical markets. Our goal is to develop long term valuable relationships with suppliers and customers and to build trust through working collaboratively with our partners.

About Hemispherx Biopharma

Hemispherx Biopharma, Inc. is an advanced specialty pharmaceutical company engaged in the manufacture and clinical development of new drug entities for treatment of seriously debilitating disorders especially life-threatening viruses. Hemispherx's flagship products include Alferon® N Injection® and the experimental therapeutics Ampligen® and Alferon® LDO. Ampligen® is an experimental RNA nucleic acid being developed for globally important debilitating diseases and disorders of the immune system, including Chronic Fatigue Syndrome. Hemispherx's platform technology includes components for potential treatment of various severely debilitating and life threatening diseases including cancers. Because both Ampligen® and Alferon® LDO are experimental in nature, they are not designated safe and effective by a regulatory authority for general use and are legally available only through clinical trials. Hemispherx has patents comprising its core intellectual property estate and a fully commercialized product (Alferon® N Injection®), approved for sale in the U.S. and Argentina. The FDA approval of Alferon® N Injection® is limited to the treatment of refractory or recurrent external genital warts in patients 18 years of age or older. The Company's Alferon N Injection® approval in Argentina includes the use of Alferon N Injection® (under the brand name "Naturaferon") for use in any patients who fail, or become intolerant to recombinant interferon, including patients with chronic active hepatitis C infection. The Company wholly owns and exclusively operates a GMP certified manufacturing facility in the United States for commercial products. For more information please visit www.hemispherx.net.

Disclosure Notice

The information in this press release includes certain "forward-looking" statements including without limitation statements about additional steps which the FDA may require and Hemispherx may take in continuing to seek commercial approval of the Ampligen® NDA for the treatment of Chronic Fatigue Syndrome in the United States and abroad. The final results of these and other ongoing activities could vary materially from Hemispherx's expectations and could adversely affect the chances for approval of the Ampligen® NDA in the United States and other countries. Any failure to satisfy the FDA regulatory requirements or the requirements of other countries could significantly delay, or preclude outright, approval of Ampligen® in the United States and other countries including Australia and New Zealand.

Information contained in this news release, other than historical information, should be considered forward-looking and is subject to various risk factors and uncertainties. For instance, the strategies and operations of Hemispherx involve risk of competition, changing market conditions, changes in laws and regulations affecting these industries and numerous other factors discussed in this release and in the Company's filings with the Securities and Exchange Commission. The final results of these efforts could vary materially from Hemispherx's expectations. No evidence has suggested that Ampligen® will ever be commercially approved for the new potential treatment indications, including, but not limited, to the treatment of CFS.

Forward-Looking Statements

To the extent that statements in this press release are not strictly historical, all such statements are forward-looking, and are made pursuant to the safe harbor provisions of the Private Securities Litigation Reform Act of 1995. Words such as "intends," "plans," and similar expressions are intended to identify forward-looking statements. The inclusion of forward-looking statements should not be regarded as a representation by Hemispherx that any of its plans will be achieved. These forward-looking statements are neither promises nor guarantees of future performance, and are subject to a variety of risks and uncertainties, many of which are beyond Hemispherx's control, which could cause actual results to differ materially from those contemplated in these forward-looking statements. Examples of such risks and uncertainties include those set forth in the Disclosure Notice, above, as well as the risks described in Hemispherx's filings with the Securities and Exchange Commission, including the most recent reports on Forms 10-K, 10-Q and 8-K. You are cautioned not to place undue reliance on these forward-looking statements, which speak only as of the date hereof, and Hemispherx undertakes no obligation to update or revise the information contained in this press release, whether as a result of new information, future events or circumstances or otherwise revise or update this release to reflect events or circumstances after the date hereof. No evidence is suggested that Ampligen® will ever be commercially approved for the CFS treatment indications mentioned in this release into USA or other countries.

Call to Action: Congressional Hearing on Ampligen

From the FDA Action Team

To all ME/CFS –S.E.I.D. Patients, Family and Friends:

As most patients know, the IOM and NIH P2P have released some very positive findings on our disease.

While there is debate re: the new name S.E.I.D., there is no debate that we need treatments. FDA continues to ignore the severity of our disease, even though they admitted on the record that prior to and during the Advisory Committee for the approval of Ampligen, that they did not fully understand this disease.

We now have the chance to use the recent IOM Report from the National Academy of Sciences and the NIH P2P findings to gain approval for the only treatment ever to be in an FDA-approved clinical trial, one which the FDA Advisory Committee voted 8 to 5 was safe for this patient population.

The opinion and data reported by IOM and P2P should make it clear to FDA and others that Ampligen’s risk is minimal and the reward potential is great for those suffering with this most devastating disease. That‘s why we are asking patients, family and friends to email the request below to those who represent us in Washington D.C. and at HHS agencies.

This will be step one of many to get a treatment approved for suffering patients. With approval will come insurance coverage, then more treatments as other companies see the potential for profits, thus leading to more research dollars.

Below is a template email. You can copy and paste it, or you can modify it to include anything further you have to say.

Let Your Voice Be Heard!

Thank you for taking action for yourself and for those unable to do so.

Kindly,

The FDA Action Team

..........................................................................................................................................

Please cut and paste the addresses below into your address bar. (These are email addresses for Congressional staffers.)

TO:
monica.volante@mail.house.gov ; sarah.curtis@mail.house.gov; Elizabeth.brown@mail.house.gov; dennis.sills@mail.house.gov; mark.ratner@mail.house.gov; james.paluskiewicz@mail.house.gov; scott.dziengelski@mail.house.gov; thomas.power@mail.house.gov ;


CC: janet.woodcock@fda.hhs.gov


SUBJECT LINE: Hearing Request for Treatment Denial

[Body of email]

To: The Honorable Congressman Joseph Pitts, Chairman, Energy and Commerce, Subcommittee on Health; Representatives Reid, Kennedy, Castor, Butterfield, Upton, Burgess, Murphy, Bilirakis

Cc: Janet Woodcock, Director, Center for Drug Evaluation and Research

REQUEST: A Hearing/Adjudication to Examine the Failure to Provide Treatment that has the potential to improve the lives of 40% of the population living with ME/CFS.

You may have recently seen the report issued by the Institute of Medicine, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” 2015. It stated that “… The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real.’”

We have been calling on the government for decades and while grateful for the IOM report – it’s just words. What happens when someone gets diagnosed, and there are no treatments? We suffer.

ME/CFS patients request that you call a hearing to examine a treatment that has shown promise for 20 years. Experts agree that between 20-40% of patients would see improvement, and without a doubt it would open the gate for biomedical research and innovation.

It is FDA’s job to approve drug treatments and it’s your job to ensure that the regulatory process allows for fair and just review which must be based on the true facts of benefit risk. The FDA does not understand this disease based on their own admission and we ask that you bring the experts in and provide an open hearing for the facts. The FDA appeals process is flawed. It is a self-review that takes years and many thousands of dollars.

A 2004 study by Reynolds et al. has estimated the direct and indirect cost of ME/CFS in the United States is between $18,677,912,000 and $23,972,300,00 annually (http://www.dynamic-med.com/content/7/1/6). These findings indicate that ME/CFS imposes enormous economic costs to the U.S. economy. This burden could be substantially reduced by the approval of Ampligen.

We need your help to get help for ourselves and so many others.

Sincerely,


[Your Name]

[Years of Life Lost to ME/CFS]

So, what do you think about the new name?

A version of this article first appeared on ProHealth.

Anyone may reprint or repost this article with a link back to the original, and attribution.

By Erica Verrillo

In September 2013, the IOM was contracted by HHS to devise a new definition for chronic fatigue syndrome (CFS), the current CDC definition being considered too broad. It was also charged with providing a new name at its discretion.

The IOM made its recommendations on Tuesday, February 10, 2015 in a report entitled, "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” One of the recommendations of the report was to eliminate CFS and to replace it, as well as myalgic encephalomyelitis, with "systemic exertion intolerance disease" (SEID).

The IOM's report on ME/CFS has generated a tremendous amount of media coverage (Time, CBS, NY Times Blog, The New Yorker), as well as considerable discussion in the ME/CFS community. While many have welcomed the report's emphasis on the serious nature of the disease, there have been some lingering doubts about the appropriateness of the new name.

(You can read and/or download the report as well as watch the video of the announcement HERE.)

A Brief History of the Name “Chronic Fatigue Syndrome”

In 1984, a mysterious illness struck residents of Incline Village, Nevada. At the time it was thought to be caused by Epstein-Barr virus (EBV), the herpesvirus that causes mononucleosis. For several years the disease was referred to as chronic EBV (CEBV). When EBV was disputed as the cause, Steven Straus of the NIH dubbed it “chronic fatigue syndrome” after its main presenting symptom. Straus was apparently unaware when he coined the term in 1988 that the disease already had a name that had been in use in the UK and Europe since 1959, “myalgic encephalomyelitis” (ME).

An outbreak of an illness identical to the one in Incline Village had struck the Royal Free Hospital in 1955. The attending physician of that outbreak was Dr. Melvin Ramsay, a doctor who not only documented the outbreak, but treated those who suffered from the disease for decades. The term he used for the disease was “myalgic encephalomyelitis,” in order to distinguish it from polioencephalomyelitis, the epidemic which had preceded the Royal Free outbreak.

Medical Impact of a Name

What people think we look like.
(Photo from thepsychologystudent)

Virtually from the moment of its creation, patients, as well as specialists, voiced reservations about the name “chronic fatigue syndrome.” Not only did the name trivialize an illness that could be devastating for patients, but it departed from medical tradition.

Illnesses are not named after a single non-specific (common to many ailments) symptom. Critics pointed out that there is no “chronic coughing disease” (pneumonia), or “chronic forgetfulness disease” (Alzheimer’s). In addition to these drawbacks, the focus on fatigue drew attention away from one of the cardinal symptoms of the illness, post-exertional malaise (PEM). It also led to confusion and ultimately to the misdiagnosis of patients who had other conditions that present with chronic fatigue, such as MS and leukemia.

What we really look like. (Jessica Taylor)

Public Reaction to SEID

While the ME/CFS community has universally welcomed the abandonment of CFS as a name for the disease, there have been mixed reactions to the IOM’s proposed new name, “systemic exertion intolerance disease” (SEID).

Those who like the new name have offered that “systemic” captures the fact that the disease affects multiple systems, and “exertion intolerance,” or PEM, is one of the cardinal symptoms of the disease. The fact that the IOM has defined the illness as a disease is especially important.

Those who are critical of SEID have pointed out that every disease affects multiple systems, therefore the inclusion of “systemic” is meaningless. They have also pointed out that “exertion intolerance” is non-specific. “Exercise intolerance” - as exertion intolerance is better known in the medical world - is a feature of cardiopulmonary diseases, hypothyroidism, cancer, and many other conditions. To make matters worse, “intolerance” can be easily interpreted by physicians as “aversion,” which increases the likelihood that patients will be referred to therapists and told to exercise. (See my analysis of the report HERE.)

Other Name Choices

Keep in mind that the recommendations of the IOM are not public policy. No federal agency or department is obliged to follow them.

Some of the alternatives to both CFS and SEID that have been suggested are:

Myalgic Encephalomyelitis: This is the long-standing name for the disease.

Cons: 1) CNS inflammation has not been definitively proven. 2) Not all patients experience pain. 

Pros: 1) The fact that inflammation of the CNS has not been definitively proven does not prevent adopting this name for historical continuity, much like the names malaria (which means “bad air”) and cancer (from karkinos, which means “crab” in Greek). 2) The IOM recognized that pain was a definitive symptom of the disease, and that it was experienced in various forms by 94% of patients. 3) Myalgic encephalomyelitis, as opposed to either “chronic fatigue” or “systemic exertion intolerance,” sounds like a serious medical illness. 4) Myalgic encephalomyelitis has been the name for this disease for 60 years.

Ramsay’s Disease: Honors Dr. Melvin Ramsay.

Cons: 1) There already is a Hunt Ramsay Syndrome. 2) The WHO discourages naming illnesses after people.

Pros: 1) There is a longstanding medical tradition of honoring physicians who first describe an illness. 2) Ramsay’s Disease makes no claim about the etiology of the disease, which has yet to be determined.

Nightingale’s Disease: Honors Florence Nightingale, the founder of the Red Cross, and sufferer of a chronic ailment similar to ME.

Cons: 1) Florence Nightingale probably did not have ME, but a chronic bacterial infection. 

Pros: 1) Florence Nightingale is famous. 2) This name skirts the issue of brain inflammation.

Cheney Peterson Disease: Honors the two American physicians who attended the Incline Village outbreak.

Cons: Neither physician has wanted this disease to be named after them. 

Pros: This name skirts the issue of brain inflammation.

Incline Village Disease: Where the illness was formally identified in the US.

Cons: 1) The outbreak in Incline Village was preceded by outbreaks in Los Angeles, London, Iceland, and various other locales, many of which had names associated with them. A clear point of origin is hard to establish. 2) The state of Nevada would not welcome one of their tourist attractions being associated with a disease.  

Pros: This name skirts the issue of brain inflammation.

Why Your Opinion Matters

In a post published on the Oxford University Press blog  Dr. Leonard Jason stressed that input from the community on what to name this illness is crucial. As he has pointed out, names can stigmatize. He proposed that with the publication of the IOM Report we have been provided an opportunity to work together to devise a name that is appropriate.

Adopting an appropriate name for this illness is important because a suitable name is a crucial part of getting recognition, funding, and treatment. As long as this disease is called "chronic fatigue syndrome" no one will take it seriously. No physician will consider it as a potentially life-threatening illness, and no researcher will be able to identify a cohort.

Without a clearly defined cohort of people who actually have the disease (as opposed to people who are chronically tired), there will be no funding, and without funding for clinical trials, there will be no treatment - of any kind.

The IOM got that much right. The question is whether SEID is any better. If it isn't, then we are stuck in the same situation we have been in over the past 27 years of "CFS."

Polls and Surveys

Recent results of polls have not favored SEID. Paradigm Change and MEAdvocacy ran a poll (March 1) that was strongly critical of the IOM's proposed name. Some of the preliminary comments were:

* If you read Ramsay’s definition of ME, it states that ME is multi system disease. This is my experience of the disease. Intolerant indicates that if the patient were given exercise therapy, their tolerance could be improved. The whole name centres around the exercise intolerance view, as CFS centred Round fatigue. There are so any other far more debilitating symptoms to ME and the worse the disease gets, the more symptoms and the more debilitating they are.

* It’s not clearly defined and “intolerance” sounds like exertion is something I’m not interested in as in laziness. I wasn’t lazy before getting this disease and now I don’t know day to day how I’ll feel. If I was a doctor and seeing this name I would think this person has psychological problems. It’s a step up from “CFS” but not by much.

* just change the name to M.E.

Health Rising has conducted a poll as well in which SEID came in last of all preferred names. (Click HERE for the results.)

What do you think?

IOM's name change is not written in stone, It has not been formally adopted by HHS, or by any US Agency. Although the IOM has suggested a WHO code for SEID, the World Health Organization has not yet assigned one.

No matter what you think of the new name, you can still make your voice heard through a variety of ongoing polls and surveys. Some of their results will be distributed to the media, and even more importantly to relevant government organizations (e.g. HHS, CFSAC).

____________________

ProHealth is currently running a three-question poll, "What name would YOU choose for CFS?"

The questions are:

1. Do you have ME or CFS? (Either diagnosis)
2. Do you think CFS should be replaced by a new name?
3. Which name do you prefer for this illness? (Names are listed.)

This poll will be open until March 21. You can take it HERE.

____________________

ME Association has a one-question poll. "Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?'

You can take the poll (and see the results) HERE.

____________________

Mass CFIDS and FM Association is running a more comprehensive survey, "What do you think about the IOM report?" 

You may leave as long or short a comment as you wish. The results of this survey will be sent to CFSAC. The deadline is March 20, 2015. Take the survey HERE.

These are the five questions on the survey:

1) What are the positive things in the Report that we can use to move forward?
2) What questions do you have?
3) What goals would you like to see accomplished with regard to this illness in the next 3 - 5 years? Are these goals supported by the Report?
4) What parts of the Report are problematic for you?
5) Do you have other comments you would like to share?