A consensus means that everyone agrees to say collectively what no one believes individually.
~ Abba Eban

At the end of the comments from the last blog, the conversation turned to the new International Consensus Criteria for ME: Myalgic Encephalomyelitis: International Consensus Criteria. Carruthers et al. I’m glad that this is becoming a place where we can consider the issues together. My personal reaction to the paper was mixed. While I found it immediately useful for sending to uninformed doctors who might recognize their patient in it, it excludes a lot of patients who will therefore be hurt by it, if anyone pays any attention to it, which they probably won’t. In particular, it excludes a large subset of patients who had gradual onset or recovered to a great extent following a first crash. I didn’t meet criteria for the first decade of my illness. I certainly do now, but if this had been the case definition, the same things would still have happened to me with respect to disability coverage, disbelief and misinformed treatment by physicians.

For the first ten years of my illness, I had no PEM. I could bench press over a hundred pounds, rode on the back of a tandem for an hour or more a couple of times a week, played tennis, could scuba dive and ski. But if I worked a full, normally intense day, I’d get a headache and a hypertensive crisis (up to 220/140). So I was forced to circumscribe my life in ways that didn’t trigger it. I worked in a clinic attached to my home to keep the day short and reduce stress. Ken Wilber’s functional bubble: link to letter and check out his very cool website I had episodes of severe anxiety, autonomic dysfunction (cyclic vomiting, not OI or POTS) and bizarre sensory symptoms (dysgeusia, globus hystericus, hyperesthesia, hypoesthesia in a dermatomal distribution). Also flu-like malaise. I didn’t meet the new ICC criteria during any of that time. I now have or have had literally everything on the list, except, for some peculiar reason, I’m still sharp, never “foggy”, and my memory is pretty good, as good as it ever was anyway. I wonder why I’m different in that respect, when otherwise I’m classic, and the only thing I can come up with is lots and lots of exposure to high dose oxygen.

The problem with this newest case definition is that it allows minimization of the huge number of affected people by looking only at the tip of the iceberg. In the past, I haven’t been too interested in what they call it; it seemed like little more than semantics to me. I thought that case definitions would surely take a backseat to viral load measures. But it hasn’t happened yet. When I read the Science paper, one of my first thoughts was, thank God, my daughter will be able to walk into any doctor’s office and say, I have XMRV, without being subjected to ridicule, but that hasn’t happened yet either. We are forced back to case definitions, the search for markers to prove a biological basis and fiddling around the edges with respect to treatment. Now in practice again, I can’t bring myself to use CFS as a diagnosis, because it’s a perjorative and will be used to deny my patients treatment. There is no code for ME, but all the components of the illness can be coded separately.

Ali went out with us for lunch yesterday for the first time since the fall, and still feels well after. She seems ready to cross that line again. She said that the things we’ve done with her have been real quality of life improvements, especially if you use hours of suffering as a meter. Glycemic control, hormone balancing, recently high dose oxygen and Meyer’s cocktail plus glutathione infusions, are the things she listed. There is no way to know how much antiretrovirals may be contributing at this point. We’ve considered going off, especially in light of the money involved, but have decided not to rock the boat. In my case, I think it’s worth taking for prophylaxis now that I’m exposed to patients, and they to me.  The trend in HIV is moving towards the use of antiretrovirals for prophylaxis and earlier treatment of infected individuals to prevent spread. The findings of Zhang et al that XMLV’s are highly infectious in a laboratory setting, as well as the isolation of XMRV from tracheal secretions, Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract. Fischer, suggest that HGRV’s may be spread by casual contact. The cluster outbreaks support this as well. Since many spouses and children are clinically well, host susceptibility is a bigger factor than presence of virus. Like HTLV, most infected people don’t become ill. 

Careful history taking suggests  that HGRV’s can turn on and off, in a minor way, for a very long time without becoming a big problem. My history suggests this, with intermittent symptoms that went back to childhood, yet I considered myself healthy and had no medical record at all, except for pregnancies, until I became ill at 41. My husband has lots of symptoms, but doesn’t have ME or CFS by anyone’s criteria. I was intrigued by this paper about nail changes in CFS: Secondary structural changes of proteins in fingernails of chronic fatigue syndrome patients from Fourier-transform infrared spectra. Sakudo. I had nail changes that started maybe a decade before I knew I was sick, so over 25 years ago. I wore acrylic nails to hide it for a few years. I couldn’t find an explanation, except a little bit in Chinese medicine which is concerned with such things, but knew it meant that something wasn’t quite right. I have no lunulas now. Nail beds are short, not wide like clubbing. Nail plates curl at the end. I have Raynaud’s, subclinical for years, occasionally visible in the last few years. I think that the changes are probably due to cellular hypoxia at the periphery exacerbated by vascular instability.

There is one anecdotal report of a young patient who improved dramatically on AZT/raltegravir, stopped the drugs after 6 months and has maintained the improvement. Our assumption that the drugs would need to be taken forever, because that’s how we treat HIV, may be completely erroneous. After following a small group of patients informally for a year and a half, my impression remains that the drugs move the illness, but we don’t know how to use them. Dr. Snyderman’s data is certainly compelling, posted last April here in Another Perspective. HIV doses may be wrong for us. There is one report of someone who has improved on very low dose AZT alone. CFS doctors have long known, start low, go slow, but because that is a no no for HIV, there is no experience so far. AZT has been used for HTLV:

The last two papers suggest that low dose AZT may be useful. AZT works for Adult T-cell leukemia/lymphoma (ATLL), a lymphoproliferative malignancy that develops in a subset of HTLV–infected individuals after a long period of latency. Mahieux suggests that in this setting, it works not through antiviral effect, but through an anti-proliferative effect, requiring long term treatment to activate tumor suppressor genes. An explanation is offered for why some patients with ATLL respond to AZT and some don’t, response to treatment being dependent upon an intact tumor suppressor gene. AZT shortens telomeres in fresh ATLL cells, eventually inducing senescence and death of infected cells. Patients with mutated tumor suppressor genes don’t respond. The relative contribution of proliferation versus viral replication likely varies between infected people, possibly determining in which direction the disease progresses, ATLL or HAM/TSP, cancer vs neurodegenerative outcome.

In the meantime, Simon Wessley wonders why people are angry with him when he says that we’d rather have an incurable retrovirus than admit that we are mentally ill: BBC news (audio). Dr. Wessely, it’s because a psychiatrist without compassion is a terrifying thing indeed. Meaningful psychiatric care, safe rehab, disability coverage, the simplest supportive interventions have been denied us for decades, but we’re supposed to thank Dr. Wessely for taking an interest in us. Go push your worthless theories in some other arena, or suffer the reaction. We’ve had enough of your “help”. Enough of your blame. When I first became ill, any real doctor could tell that there was nothing wrong with me. And I was a real doctor… The nephrologist who fancied himself an astute diagnostician was sure I had a pheochromocytoma or carcinoid tumor, but after he did all his fancy tests and couldn’t find anything, he concluded, “You’ve lost your nerve.” My hypertensive crises were diagnosed as “white coat hypertension”. How right he was, though my fear of white coats certainly turned out to be justified.

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66 thoughts on “Consensus

  1. >ME is a disease patients either have a disease or they dont.For example someone either has Parkinsond disease or they dont.Someone either has a neuroinflammatory disease or they dont.It really isnt a difficult concept to grasp.It is not up to someones objective opinion whether someone has a neuroinflammatory disease this can be measured scientifically.Using terminology like ME family is both ignorant and childish

  2. >"I can only judge on the patients that bateman and klimas enrol in studies.Whatever ails them it is not a neuroinflammatory disease because they dont have the cytokine and chemokine signatures which are common to all neuroinflammatory diseases."

    This idea seems really important.

    Would you please elaborate on this, or direct us to a place where you do?


  3. >I have just searched high and low for the REDD syndrome mentioned and cant find a single paper on it anywhere! can someone explain what the heck it is, is it a known disease????

  4. >Gerwyn,

    What's the rationale for using those particular cytokine and chemokine signatures as definitional for the disease?

    Wouldn't it be just as logical to use, say, depleted Natural Killer Cell function? Klimas' patients certainly have that.

  5. >To answer the questions above about oxygen. Ali and I are using a concentrator that can deliver 10 L/min which allows use of a non-rebreather mask, so high-dose. We have a mild chamber also, but the ease of using the concentrator alone is winning out in our house, though it is possible the chamber would produce even better results. I don't know. The concentrator is a no-brainer for us. Very, very helpful.


  6. >Neuroinflammatory diseases have a typical cytokine/chemokine signature. selecting people on the basis of fatigue and 4 minor symptoms is unlikely to reveal anyone with a retrovirally induced neuroinflammatory disease.People with HGRV infections display cytokine profiles characteristic of neuroinflammatory diseases in general and retrovirally induced beuroinflammatory diseases in particular. Thus if one is really looking for HGRVs in a study the logical thing to do would be to only include people who have been given the entirely subjective label of CFS but have a neuroinflammatory cytokine/chemokine profile indicating that in reality they have a neuroimmune disease.Many people labelled as having CFS will not in reality have a neuroimmune disease and would not be expected to have a higher than population level of hgrvs

  7. >Thank you Jamie for this:

    "To answer the questions above about oxygen. Ali and I are using a concentrator that can deliver 10 L/min which allows use of a non-rebreather mask, so high-dose."

    Can you tell me how long your sessions with the O2 are? I want to investigate this some more, and see if I can get a doctor I know to help me procure an O2 concentrator. I have tanks with an O2 regulator, but that only puts out 6 L/min maximum. The O2 helps me alleviate some of my MCS symptoms, but so far I have only used it during toxic reactions, and not on a regular basis.

    Any other info you have or can recommend on high-dose oxygen would be appreciated.

    Thanks again. ~~DB

  8. >I was never of the impression that Klimas diagnosed people based on CDC CFS criteria, with just fatigue and four minor symptoms being enough.

    Klimas has done so much work on Natural Killer Cell and other immune dysfunctions that it's hard to imagine (unless one really posits that she's sleeping with the enemy) that she would diagnose people as having the disease if they don't have those abnormalities.

    Are specific patterns of cytokine abnormalities more intrinsic to the illness than specific immunological abnormalities? How does one decide which one is better?

    It would help to know the specific differences between Klimas' patients and (say) Cheney's, with regard to the cytokine patterns. Where are you getting this info?

  9. >Jaime,

    Thank you for the information on high dose oxygen.

    Is there anything that needs to be monitored, like acidity? Read that if you get too much O2 your system can become too acidic. Is that true? Is there anything else I need to know in order to share with my doctor?

    Thank you again for your kind help with this.

  10. >"Klimas and De Meirleir covertly work to cover up CFIDS for the government and can't be trusted."

    Oh. My. God.

    And people wonder why we're categorized as being crazy.

    Newflash to Anonymous on July 31: Both Klimas and De Meirlier are two of the few doctors who have patients who have not only improved, but who have completely recovered.


  11. >I think we can (just about) all agree with you there, Eric!

    One reason not to go down the conspiracy road is that it never ends, and it leads to some very crazy places.

    Bad things can happen without there being a nefarious conspiracy behind them. Lots of people can be in denial about something, or blind to something, without conspiring with each other. Which doesn't mean there are never ever conspiracies (like that between the NHS and Wessley), but I think it is crazy-making to start looking for conspiracies everywhere.

  12. >Yes Eric, true – re Klimas & De Meirlier. Completely. And it's BECAUSE they see patients clinically, on a day to day basis, that they've been able to experiment with so many protocols…and are successful (in some cases) at last. (Sounding like a broken record here…but Chia, as well. And THOSE M.E. patients I know of firsthand.) j.nance

  13. >i don't know what country all of you live in, but in the US it is acceptable and common for officials, and doctors working for officials, to act against the common good – see "Burzynski" (sp?) the movie. it is morally reprehensible, and repugnant that people whose oath is founded on "first, do no harm", can do so much harm with no fear of reprisal. i don't think any of us will live to see the resolution of this illness because of the number of doctors involved in the active cover-up. from the doctors that rent their services to ins. companies to cull their less than prosperus clients from the lists, to doctors who help the government defraud researchers (again – see above) these people creep and crawl from every clinical orifice to infest the public and fleece them, with total immunity from indictment. this is what runaway capitalism generates, or are these people the new intellects for the new millennium, our BOBs?

  14. >Thanks Jamie
    Really illuminating
    Would taking B12 Methylcobalamine be useful for helping methylate or is this harmful?
    Lee W

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